Meeting My Recipient

Something really neat happened to me. I got to meet “my girl”, the recipient of my stem cell donation. Followers of my Blog/Facebook/Twitter know that last spring I was contacted by the National Marrow Donor Program that I was a match. All I could know about my matched recipient was that she was a thirteen year old girl with Fanconi Anemia (FA). About a month later I flew to San Francisco to donate my stem cells via PBSC (Peripheral Blood Stem Cell) Donation. I was given a couple brief updates on the recipient’s status a few months later “Transplant a success. Patient doing well with minor set-backs.” I then had to wait a year to find out who “my girl” was, and if the family would want to meet me. Our Anniversary date came. I emailed my NMDP contact for the form, filled it out and sent it back. About a week later I received her name and address – Jordan Flynn. She lived in Maine: the opposite side of the country from me. I found the clip I saw on Rock Center that I thought might be her and watched it again. It was her! I bought a cute card and mailed it off to let her know I had been thinking about her, hoped she was feeling well and I was up for contact if they were. About a week later I received a message and friend request on Facebook from her mom, Doreen.

“Hi Katy! You don’t know me but you and I have something in common, my daughter Jordan! You did a very selfless act last April by donating your bone marrow and by doing that you saved my daughter’s life. Words cannot describe the gratitude I have for what you have done. Because of you I get to see my daughter grow into a young lady, I get to see her enjoy her High School years and finally enjoy being a teenager!! I am forever indebted for the opportunity you have given her. If you hadn’t donated your marrow Jordan wouldn’t be with us today. You have no idea how much this means to me and her family. I hope that this can be the beginning of a new friendship. I do appreciate you allowing Sloan Kettering to give me your contact information as we have been very anxious to know the identity of the person who we owe so very much to! Hope to hear from you soon!  – Doreen”

We started a daily back and forth conversation on Facebook getting to know each other bit by bit. I shared my blog with her and read her online journal about what they went through during that year of transplant and recuperation. It was so satisfying to know that the transplant graft went well, but so scary to find out there were a couple infections developed afterwards that were close calls. The PBSC collection was on Monday, May 7^th. She received my cells on Tuesday May 8^th. I was back to work on Wednesday May 9^th. Not so easy for her: Jordan was in the hospital or Ronald McDonald house for something like nine months before she could go home to her family and normal life, her mother Doreen by her side the entire time. This humbled me.

I also received multiple Facebook messages from their friends and family thanking me. They all made me feel so good. This message Jordan posted meant the very most:

“Thanks everyone, for the birthday wishes! So blessed I was given another chance to be on this planet today. And thank you, Katy, for saving my life so I could be here to celebrate my 15th birthday! – Jordan”

There was an out-pouring of support and gratitude. A couple weeks into our online friendship, Doreen invited us to fly out to surprise Jordan. I couldn’t write about it or post anything about my excitement then because I didn’t want to ruin the surprise. But now that we are back from our trip I can reflect upon it. From start to finish, this donation process has truly been one of the best experiences of my life.

My husband couldn’t go with us to Maine, he is a corporate accountant and July is his hell month of fiscal year end reports, which means vacations are impossible for him at that time. But honestly I knew he was ok to stay back, he’s not that sociable. So my boys and I, and my mom who had accompanied me on the journey to San Francisco last year, flew out to Portland, Maine where Doreen met us at the airport. I felt like I already knew her, so was never nervous to meet her until that moment I texted her from baggage claim that we were ready and saw her cross the street to greet us. Oh boy, here goes the butterflies and emotions. But much to my surprise I didn’t cry. A nice long hug later we were in the car for a 30 or 40 minute drive to their house. Jordan had no idea we were coming. We followed Doreen into her front door where Jordan gave a quizzical look from the kitchen. “Do you recognize who this is?” Her mom asked her. “No,” she replied tentatively. And a few seconds later when she realized it was me, her face light up in an OMG surprise and she ran forward to hug me.

Jordan was adorable. She’s very small and thin and a little pale, but has beautiful blue eyes with long lashes, a few cute freckles and a great smile. Her hair is still growing back from when it fell out after the chemotherapy she had prior to transplant. She had the cutest little ringlet curls hitting the back of her neck – not her pre-transplant style perhaps but so cute everybody wants to touch them. She was a normal teenager. Most importantly she wasn’t sick.

The family was very laid back going about their normal routine which made it feel like we were longtime friends stopped by for a casual visit. It was nice. They have a lovely home on a quiet dead end street backed up to a gorgeous natural reserve thick with trees. We visited on the deck while my boys swam in their pool for a couple hours. Then we headed off to our hotel to rest up from our long night’s flight while they took care of some last minute wedding arrangements. That’s right – wedding – we were there on that particular weekend to be guests at their wedding: Doreen (mom) and Shawn (step-Dad). We checked into the hotel and had lunch. It was nice to lay down for a bit, shower and brush my teeth. I’m sure we were quite the sight coming fresh from 12-hours of red-eye flight where makeup had long-before worn off and hair gone flat. The Flynn’s picked us back up a few hours later to go back to their house for dinner. We got to meet the rest of the kids, 8 total in the combined family: Abby, Sammy, James, Jordan, Jacob, Jorga & Julia, and Ally. Wow, that’s a lot of dirty socks (or maybe my boys are the only ones that leave them all over the house driving me crazy). That evening we had pizza & beer and visited as more and more of their friends and family arrived. It felt so normal. Family and friends, running around the house, half of them were trying to get things accomplished for the big event the next day, the other half sitting and laughing and telling stories. It was a great way to gradually sink into the groove so that before I knew it they felt like my family and friends. Actually, it was nicer because everyone was so happy to meet us. It was amazing to watch Doreen. The night before her wedding, with a house full of people – I would have been stressed out – she was a rock star and I’d learn over the rest of the weekend that she was a true Super Mom – could get a hundred things done in a day, never lose her cool and never say I’m tired. Holy cow, she’s amazingly.

The family lent us their car to drive back to the hotel for the night and so we could make our way to the wedding the next day. We had some free time on Saturday morning to lounge, swim and get ready. Good thing too since we were not used to the time change and slept in until ten. Thanks to the car’s GPS we made it to the wedding location about twenty minutes out of town at a beautiful country venue in Grey, Maine. In Boise I would have felt nervous arriving at a function where I knew only a handful or less of the people but most were strangers, but for whatever reason it didn’t faze us there. I had met Doreen’s parents, neighbor, sister and close friend the night before and was greeted with welcome smiles.

The wedding was a casual outdoor event where the gents wore khaki shorts and the ladies wore cute colorful summer dresses. My Jordan was in the most adorable white eyelet lace dress. The ceremony included the children and the melding of the families with a mixing-of-sand-in-bottles-kind of deal that was really neat. The reception was there with a large tented area with tables for eating, dance floor in front of the stage where the ceremony had been, booze in the barn, and acres of green grass for the kids to run and play and explore. They were genius in providing outdoor games, Frisbees, footballs etc for the kids so the adults could stick around longer visiting and dancing and enjoying the festivities without being pestered by little nagging voices “I want to go home. When can we go home?” Nope, there was plenty to do, and the name of the game was to hang out until dark for campfire and S’mores. My boys even broke out of their comfort zone enough to dance a little and make friends. It felt more like a family reunion. I think this is my favorite wedding I’ve ever been to.

Shortly after our pulled pork and homemade mac-n-cheese, Doreen introduced me over the microphone. Everyone stood up and applauded, it was one of those super-sweet, kind of embarrassing moments when you don’t know what to do with yourself so you smile and wave. But it was really cool because then the rest of the day people came up to me thanking me, asking me for a hug, and just being all-round-awesome. I think I felt better hugging those ‘strangers’ more than most of my own family. Everyone showed such warmth and gratitude and kindness. My seven year old even said, “Why are they all so nice?” They really were. They made me feel like a celebrity or something. I felt my heart overflowing with…pride? Joy? Fellowship? Love? All of it. By the end of the night we had a new family we belonged to and it felt great.

Sunday we went out to lunch with the Flynn-Gummoe family for some much needed Maine seafood where we compared all our similarities and odd coincidences that made it seem like our two families were destined to be intertwined all along. Then we drove to the coast for some sight-seeing. We went to Fort William at Cape Elizabeth. It was beautiful. We walked around visiting while we looked at the old fort walls, took pictures on the rocks, and the kids hiked through the wooded areas. My boys put their toes in the Atlantic Ocean for the first time marking that off their life’s to-do-list. By the time we got back to town Mom was exhausted so we dropped her off at the hotel for some alone time and the boys and I went back to the Flynn-Gummoe house for dinner and more hang-out time. My boys got along so well with their son Jacob – playing video games, Chess and swimming – they stayed entertained the whole time. I got to bond with the teenage girls a little over some twitter talk/boy talk. We said our goodbyes to Jordan and the other kids that night knowing they wouldn’t want to get up at 4am to take us to the airport. It took me forever to fall asleep that night. I wasn’t ready to leave yet. But 4am came really fast (especially when that is 2am our time) and Doreen was there to take us to the airport at 5. Thankfully we had about a forty-minute drive to the airport in Portland to visit some more (or sleep in the kids’ case) before we had to say our final goodbyes. But I know it won’t be final, won’t be a one-time meet. These are great, generous, fun, loving people who I bonded to so quickly that I missed them already after only a couple days back. We are already talking about them possibly traveling out to see us in Idaho next summer, or some kind of annual or biannual reunion. There have been almost daily interactions via text, Facebook or Twitter since we left. I truly grew attached. Life’s reward for this donation experience is new lifelong friends and it can’t get much better than that.

{Do you want to help save a life – visit http://bethematch.org/ to learn how}

Donor Inspiration & Anticipation

Most spam or newsletters sit in my email box for many weeks before I actually look at them or delete them. But I always look forward to the newsletter updates I get from The National Marrow Donor Program (BeTheMatch.org) and I read them right away. They revive my inspiration and mojo. In the midst of a stressful work week, dirty house chaos and parent-teacher conferences, it reminds me what a great feeling it was to have been a donor and that I did something in this life that made a difference in someone else’s. This article/letter in particular really touched me:
http://www.bethematchblog.org/2012/09/you-made-a-choice-that-many-people-dont-make-parents-personal-thank-you-to-donor/

I still have seven months left before my recipient and I can request each other’s contact information. I can currently send a card or something to the family through the NMDP but it cannot have any identifying information what so ever in it and so I haven’t done this yet. I’ve thought about it many times, but it feels like a hard line to walk and I haven’t been sure what yet to say or do. But, I can tell you, it drives me nuts not to be able to know how my recipient is doing. Last update I had gotten about two months after the procedure was that the procedure was a success and she was doing well. That was such a huge relief. But it’s so hard to just let it go at that and not think about her and her family.

“Is she completely cured? In what ways does she feel different or better than before?”

“Is she back at school? Is she able to do things she couldn’t do before?”

“Did she get any of my allergies through my blood?”

“Has she had any setbacks?”

“What are her hobbies?”

But life goes on, and hopefully her life goes on now as well, and I will just have to wait until after May 8, 2013 to see what happens.

Big City, Big Heart – PBSC Donation in San Francisco

I am writing from day two of my five-day donor process. It’s not quite 9:00am yet and I sit in bed contemplating going down to the hotel restaurant in my pajamas, as pancakes sound good, but getting dressed does not. Don’t worry I am sure dignity will eventually win out and I will put on some actual clothes. Although apparently pants are not required in San Francisco as we saw yesterday.

San Francisco:

And so first, a couple words about San Francisco. This is my first visit here. And if this was a personal family vacation I’d have the whole thing planned out full of tourist sites and activities, and a nearby modern chain hotel. But that is not the case. The accommodations were planned for us and the trip is not for tourist exploration, it is to potentially save a life. Although we will fit in whatever spontaneous fun we feel up to. First impressions: Flying in I was surprised by all the surrounding wooded areas. I’ve been in Southern California where the non-city areas are mostly dry hot desert. Here it is beautiful from the sky. Driving from the airport we saw some gorgeous hot pink flowers in this ground cover looking plant, and plush ivy grew along the freeway, climbing up trees and over the barriers. How does this ivy look so clean, like it has a waxed shine, when it is soaking up the dirt and exhaust from millions of vehicles everyday and yet the ivy in my yard could use a good dusting? Anyway, we first had to drive to a pharmacy in Millbrae where there was a prescription for an Epi-pen awaiting me. (This is a requirement in case there is an allergic reaction to the shot). I really like Millbrae – it was cute and clean. The first areas we saw were obviously the newer more suburban areas. As we got further into the city it looks more and more like the typical San Francisco views we see on film: hill after hill of townhouses stacked side by side like a million people trying to cram into 46 square miles. Oh yeah, that’s exactly what it is.

It did not take me long to realize that Caucasian is the minority here and it appears to be 60%-70% Asian people (at least that we’ve seen). Not that there is anything wrong with that. Just an observation. And it is good for us country girls to be around more culture, and to see what it is like to be surrounded by people who don’t look or talk like you. If you’ve never been to Idaho – it is very vanilla. A little more chocolate chip cookie dough-ish in Boise.

Our hotel here is a little less than perfect, but not a big deal. I just won’t be soaking in that old stained bath tub during our stay, or lounging by the outdoor pool on the roof visible to all on the busy street corner where the cold wind whips through. Overall its pretty cute. And the hotel restaurant may only serve hamburgers for lunch and dinner, but do offer some overpriced breakfast options in the morning, so that is convenient. We were also lucky enough to get a room in the perfect spot for late night noise and high volume foot traffic – near the elevator, ice machine and housekeeping laundry room. Sweet! But we can’t complain too much it will be fine. I was only woken up by noise once last night, which was down from the three times the night before. Whomever designed the hallway with the grooved tile floor was a real genius. Nothing like the sound of suitcase wheels hitting every grout line along the way at five in the morning.

Stem Cell Donation:

So back to the bone marrow/stem cell donation stuff. Our nurse Jennifer comes to our hotel room each morning (how convenient is that?), and she is super nice, I totally love her. Yesterday she came, took some vitals, took a starting blood sample, gave me my first two shots in the back of the arm. They give me two because they are both tiny amounts and they don’t want too much given in any one spot so they change the location each day. Then that afternoon we met with the bone marrow donation office at UCSF Medical Center, also super nice people. Nurse Tom showed us where we need to go on Monday and took us to meet the hematologists. They looked at my arm veins to see if they are big enough to handle the tubes required or if I will need a central venous line. They slapped my veins around a little (not really) and said we’ll try it. They were super nice too. I love how everyone I meet is so appreciative that I am donating. They treat us very well. Nurse Tom asked if I knew anything about the patient and when I told him her disease was Fanconi Anemia, he said it was probably her last hope. He said it is a phenomenal gift I was giving and they always needed more people to donate. He told my mom she did something right in raising me and I swear to you his eyes teared up, which then of course made Mom and me tear up too. Nothing touches me more than seeing a man be emotionally touched by something. (I don’t get to see this often) My mom thinks the patient is here in the same medical center but I told her she could be anywhere in the world. I wonder if they fly it to her in a beer cooler like heart transplants? You certainly don’t want that getting lost via FedEx.

After UCSF, we had our driver drop us off at Fisherman’s Wharf. We walked around, bought a couple souvenirs and postcards and had dinner at the famous Alioto’s. It has been chilly here in San Fran; 60’s with a breeze and showers off and on, so when we sat looking over the pier with a view of the Golden Gate Bridge, the sun shining in on us, it was heaven. Mom and I sat in silence for a long time. I zoned out, just staring at the sun shining off the water. It was peaceful. It was my favorite part of the day. I could sit like that for hours. And its a good thing because it took about that long for our food to get to us. But boy was it delicious. I had crab cannelloni and Mom had Risotto Alioto with a truffle sauce – to die for! And just when we were thinking our waiter wasn’t very dialed in to us, he came over and started chatting, asking where we from, etc. Mom started telling him our story of what we are here for and he was very interested. He said he was so impressed he was going to tell his girlfriend about it when he got home. Then he came back and gave us a free dessert on him. And at one point, even he looked like he was tearing up.

I’m telling you, I am feeling such love and humanity, hope and inspiration through this whole process. Just the way it makes people stop and think for a minute about helping each other, about giving of oneself, about sharing life or love with a stranger. When people hear of someone donating something so valuable and sacred to help a stranger’s life, they think it is honorable, but they also pause to think about would they do it? Would they be willing to give like that. They may have never thought of it before then. I think by me going through this process it has touched the lives of so many around me in little ways. And if every donor sees that in people around them – wow – what an impact making a difference can make. I know it is making me feel so good, like a super hero. I don’t have super powers, I can’t fight off bad guys, fly or lift a truck over my head, but my bone marrow produces healthy blood cells. I can share some and make some more blood tomorrow. How simple is that? The cure to someone else’s fatal disease could be in my stem cells. Of course they can have it. If someone told you the cure to their disease, the thing that could keep their child alive, was in your blood or marrow, wouldn’t you say have at it? It’s not like a kidney or organ we can’t live without – we can make more blood & marrow – we do it everyday. Be someone’s hero – go to BeTheMatch.org or http://www.marrow.org for more info. You can’t help if you’re not matched and you can’t be a match if you’re not on the registry. You could be on there for years and never get a call. But someday you could be someone’s lucky life-lotto ticket.

Half-way There: My Journey to Stem Cell Donation

We are now one month away from my donor collection date, which is planned for May 7th. I’ve gone through all the information, the bazillion consent forms, and the medical tests and I feel ready.

A secondary benefit that is coming out of this process is that I am finding out how healthy I am. I think because I have Asthma and allergies, take two medications daily, and see the Chiropractor a few times a year, I felt unhealthy. My husband often teases me that I am falling apart (when I complain of some ailment or ache). But the truth is, I’m pretty healthy. My blood tests came back good. I’m disease-free. My sugar levels are all fine. (Thank God that Milk-Dud addiction didn’t cause Diabetes.) I’m not pregnant (no duh). My chest X-rays were clear. And my EKG is perfectly normal. So if nothing else, I’ve gotten multiple medical tests and a clean bill of health on someone else’s dime. The doctor that did my physical cleared me, and a doctor from UCSF, where the procedure takes place, called me to see if I had any questions. Although my NMDP coordinator didn’t say I had the official ‘all clear’, the doctor said I was cleared. Whoohoo! I would feel so bad if I was this girl’s one shot and wasn’t healthy enough to help.

Although they have not given me any specific diet to follow or do’s or don’t’s, I find myself trying to make healthier choices. I want my blood to be the best blood it can be for her, and for my body to recoup quickly. So I have been trying to get more iron in my diet, eating more red meat, kidney beans, greens, cream of wheat, and making sure I take my daily multi-vitamin. And even though I am not getting marrow removed from bone, my wacky brain has me drinking more milk and taking in more calcium – strong bones, strong bodies – Milk does a body good!
I was already trying to lose weight before this started, then kind of gave up for a bit when I went on my bacon cheeseburger bender; but now I am trying again and trying harder. Walking two miles on my lunch break, yoga, dieting, drinking more water, less soda, and avoiding alcohol all together. I’ve lost three pounds in a week and would like to lose another five before the procedure.

I am also totally over any nerves I had about the process. The NMDP put me in touch with a lady who donated a year ago so I could ask questions about her experience. She experienced headaches every day of the shots, but they went away one day after. And the machine broke down during her PBSC Collection, but it didn’t hurt or bother her in any way. She had a positive outlook on the whole thing and wished me luck. Facebook and Twitter have also been a huge help. I’ve been able to connect with a man on Twitter who was going through the process right now and he was kind enough to give me daily updates on how it was going and the symptoms he was experiencing. He didn’t have much pain at all until day 4 & 5. And when I announced what I was doing to my friends on Facebook, I got a record setting 50 likes and 22 comments – all wonderful, encouraging, praising comments. It made me feel so good. I’ve also had a number of friends express interest in possibly signing up on the registry themselves. So I am very happy to be sharing my story if it can possibly inspire someone else to volunteer, and they end up being a match to someone some day, and that saves another life. Then I’m making a difference in multiple lives. The thought makes me giddy and gives me warm-fuzzies.

So now I just wait, hope that I don’t catch a cold between now and then, and pray that everything goes well with the patient. I wonder if that family is sitting around wondering what I (the donor) is like as I am wondering what they are like? I am sure they are very worried about the process and the risks for their daughter, and if it will be successful. I sure hope it is. Once she starts her chemo that will kill off her immune system in prep for receiving my stem cells, it will be so dangerous. There would be an extremely high risk of death if I was to change my mind at the last minute after that process had started (or get too sick to do it). So I am praying to stay healthy, stay safe, and don’t let them down. I want God to send them peace of mind that I won’t change my mind. I’m in it to win it and I’m taking my vitamins.

It’s A Match

It has been awhile since I blogged and there is actually something really important going on in my life right now so I better start documenting it. What’s up you say? Well… I have been registered in the National Bone Marrow Donor Program for fifteen years. (Seriously, how am I old enough to have done anything for 15 years? Arrg) Anyway, last week I got a call from them. I am a match. I am like the winning lottery numbers for some family out there who has been struggling with a sick child for thirteen years. It is a miraculous thing to find a match outside the family. And I am so very honored to hopefully be a part of saving a life. As a parent, there is no worse thought than losing a child. I am very lucky to have healthy children. But it doesn’t stop me from the ‘what if worries’ now and then. So, I am pleased to participate and sure hope it goes well and is the cure they need.

Isn’t it crazy amazing even to think that something inside my body could possibly cure someone else’s illness? And it may not be a complete cure, but when I looked up this particular disease – Fanconi Anemia – it pretty much said hematopoietic stem cell transplantation is the answer, if everything goes as well as intended. The patient can still be susceptible to developing other cancers later, but it sounds pretty hopeful. Fanconi Anemia is a rare blood disorder that leads to bone marrow failure, which leads to a failed immune system, which leads to Leukemia, which you know that is not good. This disease can also affect other organs such as the kidneys, and put them at higher risk for tumors. Average life expectancy is between 20-30 years old. I don’t like when children are given life expectancies. Every year at the Cystic Fibrosis fund raiser dinner I attend, when they give the update on the new average life expectancy, I instantly cry. Cry at how stifling that ceiling would feel to the family and the child. And also cry tears of happiness because it continues to go up each year through research and new treatments. But I digress…back to this situation… which will also be part of their ongoing research study of this procedure as well as for the Fanconi Anemia recipient studies.

So, I have had the informational session. I have read through all the paperwork and signed about a gazillion consent forms. I have gone through the physical exam, blood work, EKG, and other medical testing. I believe I have been cleared by the doctor here, but am waiting for the patient’s doctors to make the decision on if I am healthy enough, perfect enough fit to not be too risky for the patient. Then I’ll just be waiting on the official date scheduling, which has already moved once. And if I am confirmed, then I will be in San Francisco in a month getting shots and doing the PBSC procedure. My mommy will be with me (hey everyone wants their mommy when they are sick or injured, it’s just natural). I will take my laptop for writing, some books for reading, and probably Season 1 Game of Thrones that I’ve been trying to find time to watch. And I won’t have to clean or cook or practice spelling words for five days, so it won’t be all that bad.

I’ve gotten great response from friends and coworkers so far. They’ve all been very encouraging, proud, and said it’s a wonderful thing I am doing. My husband is worried about the Filgrastim shots creating some kind of long-term side effect in my body and possibly increasing my own chances of cancer in the future. I am not so worried about it. My oldest son said he wants to come with me so he doesn’t have to do homework with Daddy. And my youngest son cried and told me not to go. But I discussed the whole situation with my boys and told them what this could mean for that little girl and that family and then they understood. Luckily my boys are so smart and when I explain things to them they become very compassionate. I’ve been trying to raise them to be very socially aware & responsible and charitable, so this is a great opportunity for me to set a good example of being giving of ourselves.
So wish me luck.